Events

Nov
2
Sat
MORE
URMC Rett Syndrome Family Education Day
Nov 2 @ 8:00 am

$10 registration fee per family including conference, breakfast and lunch.

Families and caregivers: don’t miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field.

Information & Registration

For more information, email: delmonte.urmc.edu or RettSyndromeFamilyEducation@urmc.rochester.edu

Jan
7
Tue
MORE
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm

Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children’s Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University.

We will discuss ¿Qué es el síndrome de Rett?

This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Feb
11
Tue
MORE
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm

Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions.

Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego.
Dr. Pichard is Rettsyndrome.org’s Chief Science Officer

Visit our Education page for upcoming 2020 webinar topics, and to access recording links from past webcasts and associated QA documents.

Register Today

Mar
10
Tue
MORE
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm

Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.

We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Apr
23
Thu
MORE
RettEd: Maximizing Neuroplasticity in Therapies feat. Dr. Pam Diener
Apr 23 @ 1:00 pm

SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use.

Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher.

Registration & Information

Jun
6
Sat
MORE
East Coast Rettsyndrome.org Ed Day
Jun 6 @ 9:00 am

East Coast Rettsyndrome.org Ed Day

June 6, 2020
Baltimore, MD (in partnership with Kennedy Krieger Institute )

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

REGISTRATION & INFORMATION

Aug
15
Sat
MORE
Northwest Rettsyndrome.org Ed Day
Aug 15 @ 9:00 am

Northwest Rettsyndrome.org Ed Day

August 15, 2020
Vancouver, WA (in partnership with the Northwest Rett Syndrome Association)

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

Registration opening soon.

Sep
19
Sat
MORE
Southeast Rettsyndrome.org Ed Day
Sep 19 @ 9:00 am

Southeast Rettsyndrome.org Ed Day

September 19, 2020
Greenwood, SC (in partnership with Greenwood Genetic Center)

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

Registration opening soon.

Oct
10
Sat
MORE
Midwest Rettsyndrome.org Ed Day
Oct 10 @ 9:00 am

Midwest Rettsyndrome.org Ed Day

October 10, 2020
Chicago, IL (in partnership with Rush University)

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

Registration opening soon.